Ibrance (Palbociclib)
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Jaycee - Thanks for your endorsement on my dental work.... Try as I might, it's hard not to factor potential life span into some of the decisions we are faced with. Ultimately though, it makes me feel good to "invest" in myself.
And to answer your other question, you and I are pretty much opposites when it comes to treatment. I come at it with an often unproven bias that "more is better," even if data and doctor recommendations say otherwise. So in order to reduce dose or dosing schedule, I have fight that internal bias in order to come to terms with it. I think my MO helped me to see that staying healthy at a lower dose or reduced schedule is better than risking more serious infections at the max dose and schedule. I just need a little time to get my head around that even though I know intellectually that it's the right thing to do and it makes medical sense. For example, my questions for him were in trying to determine which of these two options equates to "more treatment".... His feeling is that a reduced schedule at the higher dose is like a "half step down" while the reduced dose at the current schedule is like a full step down. But I want to get the opinion of onc #2 before I decide which route I will take.
SO for me, it's not a courage thing really, but more of a personal philosophy that I have to figure out how to change. Thanks for asking the question, which forces me to think it through by writing it down. I appreciate you!
Lauren
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candy and others, I took Arimidex over 7 years and my feet ached. There were times when the outer edges of my feet, the whole perimeter, was sore. Occasionally, if I landed on the edge of my foot a certain way I would wince and stumble a bit in pain. I worried that people would think I was drunk or high. I really didn’t have aches and soreness when off my feet, only when standing/walking.
Due to this, I almost always wear sneakers with thick soles, like Skechers. And I wear insoles. They are a must. The brand I buy is Powerstep Maxx and I’ve tried others but nothing compares to the Powerstep. About $36 on Amazon, last at least a year and worth the price. The soreness doesn’t go away but its much more manageable and I can be on my feel longer.
I refer to the side effect of Arimidex as aches and soreness more so than pain, because last year, I had a broken metatarsal foot bone, such a small bone but it was pain, and different from the Arimidex issue. I had surgery to get a pin in the bone as it wouldn’t heal on its own, its good now.
I’ve been on Aromasin for a month, still have soreness in feet. So switching ai’s may not necessarily work to relieve the matter.
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hi Candy!
My theory on why AIs cause joint and muscle pain:
1) AIs block estrogen. Estrogen is “plumping” and makes us “juicy” as well as our joints and tissues. When we eliminate estrogen from our bodies, the joints and tissues that are used to be nice and juicy become, generally speaking, dried up. Because they are less “juicy” with estrogen, they are more prone to inflammation/arthritic-like pains (tends to be worse in the morning, better with heat and movement). The heat and movement gets the ol joints a little lubricated up albeit briefly. Hence why exercise is highly recommended to combat the side effects.
2) I believe that the parts of our bodies that we use the most or areas of the body that have sustained injuries (accidents or surgeries) or overuse (joints, certain muscle groups, heels, fingers, wrists, shoulders, necks) tend to be what experience the most aches and pains. So, this can explain why we each feel the pains in different parts of our bodies. Some areas are similar.
For me, I overuse my right thumb (I have been a massage therapist for 12 years now) and ever since I started letrozole, my right hand has gone through a series of pains. Started with carpal tunnel, then moved to the thumb side of the wrist, then moved into my thumb base joint which is now incredibly swollen despite hand therapy and thumb exercises that I’ve tried. My thumb subluxates (pops out) now too, which is awful!! 😭 not a fun experience. I have started to wear a brace to support it.
Heels are painful because what do humans do? Walk upright!! Many of us put much of our bodies pressure on the heels of our feet. When we walk, we are absorbing the weight of our bodies in our heels. Hence the heels take a beating.0 -
Candy,
I have been on letrozole since 2006. In maybe 2015, I had excessive heel pain on one heel, running up to my ankle. My ankle also swelled some. I wore an ankle brace every day, and it healed up somewhat, with intermittent pain. Two years later, I had the same thing happen on the other side and I went to a board certified podiatrist. He diagnosed it as tendonitis, and I got inserts for my shoes that I wore religiously.(He said that the ankle brace doesn't help.) I had to change the type of shoes that I was wearing (no more heels) and if I forget that, I get occasional flareups especially if I do long walks or hiking or something like that. When I can, I wear Birkenstocks, Vionics, or really good sneakers with a lot of arch support. I never connected this with letrozole, and never mentioned it to my MO until after the fact. When I finally told her, she said that tendonitis is a known side effect of letrozole. Could that be what it is? I went for the longest time thinking it had something to do with my Achilles tendon.
Hope this helps
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I took Arimidex for 11 years after early stage disease. I had a lot of pain initially that I fought with Celebrex (which was also being studied for its anti cancer properties at the time) but backed off that when new reports said it was potentially damaging for your heart. Since then, I've taken supplements to support joint health like glucosamine and I still do to this day. I don't think I ever experienced the kind of pain that you all describe and I'll count myself among the few lucky ones. I don't know if the glucosamine helps or not but I am having the same experience with Faslodex (which I know works differently than the AIs) . I have this or that daily ache or pain but nothing consistent or overly bothersome in all of these years on either Arimidex or now Faslodex. Have any of you tried glucosamine? Maybe that helps me more than I realize and I've been on it for more than 15 years now. Just a thought.
Love to all,
Lauren
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Thanks all. I like the concept of being less "juicy" per ichangedmyname. And I didn't realize tendonitis is a known side effect of Letrozole per BevJen. I do also have rheumatoid arthritis so my joints may also be "less juicy" because of that too. I just don't know how to explain to people why I hobble. " I have breast cancer and the meds make my feet hurt " Wow, how to explain that !!!! BREAST cancer and sore HEELS. Just some more fun things we MBCers go through. The general public doesn't realize what the meds do to us to keep us alive. But like I said, I am glad the cancer is at bay and I will just keep hobbling along.
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Candy - I completely hear you on your point about how to explain obvious symptoms to kind compassionate people who ask random questions.... I lose my voice monthly with my "end of cycle infection" and it can last for more than week or sometimes longer. Every meeting I am in at work starts with 5 people asking how I lost my voice... and jeez it seems like you just had that same infection not too long ago??? "well, the thing is I have MBC, which requires that I take meds on a cycle and at points on that cycle my white counts get really low, which impacts my immunity, so I get this recurrent infection...." So instead of all of that I typically just say - "yeah.... I have a cold." And I know people are looking at me thinking, shouldn't you get that thing checked out? Seems like you've had it for 6 months! :-)
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I was looking online and found this article. Hope the link works as I am not too techy. The thing is I was diagnosed with Rheumatoid Arthritis and Sjogrens Syndrome in 2014 by a rheumatologist. Both are autoimmune disorders. I was diagnosed with MBC in 2017. This article discusses the use of AI's and that they MAY CAUSE autoimmune disorders and also the side effects of AI use WITH KNOWN autoimmune disorders. Very interesting. I wish I could go to a teaching/research facility for my MBC as I think it would be beneficial for myself and others to study my case. But I live in a rural setting and travel to such a facility is not feasible. But with the connection made in this article, I think that is why I have the joint pain I have with Letrozole use. Weird to say but it makes me feel validated that my pain is real.
Does anyone know what the protocol would be if I would want to seek out presenting my cancer case with my history to a research facility to help me and others??
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Really interesting, Candy. I know that my MS has gotten progressively worse during my time on Letrozole. The link works fine, BTW. I read a good part of the article. I'll read the rest later. It does the usual, "more research is needed" at the end which is such a cop-out. I used to do it myself so I know it is a cop-out. Just say what you think, even if you might be criticized. I'm going to look for a thread on BCO that brought up this relationship a while ago. Hope I can find it.
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Candy, here is the thread I was thinking of.
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Lauren, thank you sooo much for your insights! Very helpful indeed 🙂
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For those here who have had BC remain dormant for years before metastasizing, this article may help explain that.
Won't it be great for so many in the future if this turns out to be the answer and there are already existing drugs to fix it?
https://corporate.dukehealth.org/news-listing/stud...
Have a wonderful week-end and pray for the researchers!
Love from PatGMc
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PatgMc, since I'm one of those whose cancer was dormant for 25 years, this is a very interesting article. Thanks for always keeping us posted. As you may have noticed, I don't post much anymore but I lurk a lot. So far, my cancer is still stable ( since Jan. '16) using only Letrozole after about 16 months of Ibrance. I pray it stays that way for a long time.
I've been reading about all the side effects everyone seems to be having and I have to just say, many of them are probably due to the letrozole as I have a lot of the same things going on. Nausea, joint and muscle pain, hair loss, anxiety and now it seems depression too. It's always something but it's better than the alternative although I'm getting very nervous about when the letrozole will fail. It's hard to chase the devil out of my head sometimes.
I pray for all of us everyday and also pray for a cure.
Love and prayers,
Faith ( in the future)
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Jaycee- Thanks for the reminder. I think I have posted on that thread before. I also printed out the article I referenced and am planning on showing it to my MO and starting a discussion on my autoimmune issues with her. We have never had that discussion---I go to her (MO) for the cancer and have been to the rheumatologist for the autoimmune issues but the two have never combined. Such is life in a small community. I would think in a bigger healthcare setting we would look at the whole person and would combine discussions with the 2 specialties. That is why I would love to go to a research/teaching facility. I also researched more articles this afternoon. There seems to be several articles that infer diagnosing autoimmune issues AFTER AI use--AI causing the autoimmune issues. But so far I cannot find articles that discuss cases with autoimmune issues BEFORE the cancer/ AI use and what that could mean for not only pain but prognosis. Anyone with advise?
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Faith, I'm so thankful you're still stable. Who knows what will have been approved should your letrozole ever stop doing its job? And who knows how much of what's happening to those cells is your own immune system doing its job? (I'm going with that theory!)
But, just in case, I see more and more that people are revisiting Ibrance after long breaks from it and it works again.
For some techniques to fight depression, I recommend the work of Albert Ellis and Rational Emotive Behavioral Therapy. You may be able to read his "New Guide to Rational Living" online. If not, it's probably totally cheap to buy a used copy on Amazon.
Love to you from PatGMc
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very interesting discussion- after 6.5 years on exemestane, I suddenly developed plantar fasciitis in both feet, and never imagined it could be due to the drug. I did all the stretching and getting foot supports, etc, nothing worked at all, and I truly had to hobble all around Italy on a trip I will never forget. But it struck me that the orthopedist said it was high unusual to develop in both feet at the same time, plus I got other problems that started up around the same time, carpal tunnel in both wrists and a general sense of "twittery nerves" that scared me as the closest I could describe it was the feeling that I was being poisoned or maybe developing Parkinson's. That's what caused me to drop the exemestane out of a fear I had stayed on too long and was developin off-target toxicity, and the foot problems and odd nerve sensations completely went away within a month or so of dropping the drug. I've always wondered if it was exemestane-specific problem, but from this discussion clearly I wouldn't have been able to switch to another AI. Now after some years I have not had the problem on femara, however maybe it would show up again if I were to stay long enough on the drug. For me it was a major deal side effect but only developed after years on the drug...
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PatG, thanks for reaching out. Yes, my MO has said we could probably try Ibrance again and he’s also mentioned Faslodex as a possibility and who knows what else might be out there in a year or two or however long it is before we need something else again. We are lucky that there are so many new drugs in the pipeline, but it sure would be great not to need them.
Thanks also for the book recommendation by Albert Ellis, I’ll look for it. Thank you too for always being a great cheerleader here for so many of us. You do so much to help us all. I hope you are also being helped by others here.
Love to you from Faith
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Thank you, Faith, I do love everyone here and get so much encouragement. I'm excited to be starting a new local support group in Memphis this Sunday where I can share so many of your stories. I wish all of you could be there in the circle. It's called Hope Up!
Love from PatGMc
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Cure-ious, you just mentioned something that has been bothering me lately. All of a sudden I've been feeling very anxious and jittery. I can feel my blood rushing though my arms sometimes and my blood pressure is running high. I went to my PCP and he added another drug to my BP med regime, just what I didn't want. I wonder how much the letrozole has to do with this. I've been using a different generic Letrozole for about six weeks now and I wonder if that could be the cause of this jittery feeling. I was able to get my pharmacy to order my old generic brand of Teva, so maybe that will help. I'm also considering trying to get the brand Femara from a Canadian pharmacy although it's still pricey. We really have to take care of ourselves and do our own research sometimes. It's a full time job.
Thank you for all the research you do, it's so helpful.
Love and prayers for all,
Faith
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Friends, I know we work hard at not thinking about dying so I'm reluctant to post this article but it's so sweet. I'm going to put my permanent cheerleading outfit on a hanger for a few minutes and share this with you.
Do I think many...maybe even most of us have a great shot at living a very long time with MBC? And do I think some of us will be cured? Yes, but I know some people will die from this or something else. Actually, I guess we're all going to die from something, aren't we?
Anyway, this therapist's words touched my heart. It's good to know that others will stick with us to the end and will remember us when we're gone. I will remember all of you....the days when you expressed how frightened or depressed you were, the days you celebrated trips and holidays and good scans, the days you found humor in a dark place. You are part of my world and you always will be. I thank God for you.
https://www.nytimes.com/2019/04/18/style/therapy-p...Love from PatGMc
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PatgMc- Beautiful article. Thank you for posting it. All of you are a part of me now too. And I will remember you too. I love you all.
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Pat, thank you for your humor and your honesty. There is sweetness in this article, and pain, and "realness" that I think about often. Since everyone is going to die somewhere and somehow, we should feel freedom to think and talk about it which is the real message in this article to me. No one should feel shamed or silenced to express their fears and emotions on death whatever that may be. There is a freedom and a richness in having someone to share it with. That is part of the blessing of this chat room. I agree with you and I am thankful for you all.
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I loved the story. I have her new book on hold at the library also. She was interviewed recently on Terry Gross. Therapists, oncologists, nurses etc care deeply and think about their patients and grieve and celebrate with them- sometimes you don’t know about it though
It’s a balance to plan for the future and exist in reality. I am choosing to keep planning since I have no crystal ball. Or as my first MO told me 7 years ago- everyone has a black cloud over their heads, yours is just bigger.
It’s a pretty day here- hope it is wherever you are.
Nanci
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loved the story Pat!
Brought tears to my eyes - very tenderly written.
I see a psychologist who knew nothing about MBC before I started working with her two years ago. She has helped me IMMENSELY through this journey. We are learning together.
Mostly she keeps me in “reality” and helps me to not get too far ahead of myself, unless it makes sense to. With past therapists we have dug up my old wounds and traumas and worked with them to see how they are planning out later in life. But with this woman, we simply shoot the breeze, laugh a lot, I cry at times, and we review what is important rather than dredging up the past - which I have done innumerable times with other therapists.
I am grateful for her and I would love her to stay with me till the end too 💕💕💕💕💕
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So it looks like Ibrance has stopped working for me. My markers (27-29) increased two months in a row from 38 to 44 and then to 58. I went from having a single lymph node in the mediastinum to 6 bone mets and a liver met that is localized and about 2cm. My MO wants to to radiate some of the bone mets (mainly because some are causing me some discomfort) and then move me to Xeloda or some other chemo regimen. I'm pretty freaked out since this is my first progression that isn't to lymph nodes.
I feel good about Xeloda since I know so many here have done well on it, but am so disappointed that there are no other approved targeted therapies for Er+ cancers after Ibrance. Wanted to check in here and see if anyone has tried anything else that worked and maybe just some hope that once Xeloda fails there is still something else that can control this horrible disease.
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Ann, there are many other targeted drugs that could be considered. Will you be getting a biopsy or some sequencing done? It would be helpful to know how the cancer has mutated to escape the drugs you were on, and whether the cancer is still hormone-dependent and Ibrance-sensitive. What drugs have you had thus far?
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Cure-ious I have a biopsy scheduled on Monday to take a sample from the liver to see if the biology of the tumor has changed. He is also talking about sending it off for sequencing, now that we may have enough to sample. So far, I have been on Halaven, FAC and Tamoxifen (while still stage 3), moved on to afinito/aromasinr after stage 4, this kept me NED for 3 years. After a minor progression to a lymph node, I started on Ibrance/Letrozole. Tumor markers actually came down for about 6 months and then started creeping up. My MO is hoping that something about the tumor may have changed which might give us more mways to target it. Im hoping so also, but I'm not sure how likely that can be.
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OK, so it will be important to learn if you have an ESR1 mutation (a mutation in estrogen receptor that makes it active even without estrogen) or a PI3K mutation (the two most common changes), or some other change like FGFR amplification. ESR1 mutations still can respond to Faslodex, and apparently are even stronger inhibited by SERDs (only availalble in clinical trial), and these can be given with Ibrance. For a PI3K mutation, the FDA should soon approve Alpelisib, which is given with Faslodex. Given that you had such a great response to AA therapy, you might do really well on Alpelisib. Also if you have a PI3K mutation recent studies have said its a good idea to also take a COX-2 inhibitor drug like Celebrex. It will be important to know if you have developed a CDK2 or CDK6 amplification or loss of RB, which would inidcate resistance to Ibrance, but if you don't have these mutations you may still remain sensitive to a CDK4,6 inhibitor. There are clinical trials testing Ibrance, Faslodex and Immunotherapy, or Abemaciclib with Immunotherapy. CDK7 or CDK12 inhibitors are coming along which lab studies indicate might be ideal for cancers resistant to CDK4,6 inhibitors. We also have Alisertib, PARP inhibitors and BET inhibitors and HDACinhibitors. Chemo is fast and convenient, but keep in mind that some trials won't take people with more than two chemos in the metastatic setting. so it would be a good time to get a second opinion and be sure of your options at this point.
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Cure-ious, thanks for all the information! I know the I have FGFR1 amplification so alpelisib is probably out for me. I have P13KA which is probably why afinitor worked so well. I also have CCND1 which motivated my MO to try Ibrance even though there is evidence that Ibrance may not work after afinitor (to be fair it worked for 6 months). That seems to leave me with Alisertib, PARP inhibitors and BET inhibitors,HDAC inhibitors and COX2 inhibitors. I wasnt BRCA positive so am not sure if PARP inhibitors will work for me? My Onc did say that he's seen instances where they were used even if one wasnt positive for those markers.
My MO seems to be excited about Opdivo and Keytruda (mostly though because its been working great for his lung cancer patients), and is hoping that it gets approved for breast cancer soon.
At this point though, Xeloda seems to be the most obvious thing to try from his point of view. It would be my first chemo in the metastatic setting. I definitely dont want to end up not eligible for trials later on but am so confused about which way to go. The most frustrating thing about all this is that there seem to be so many treatments on the horizon and yet, its unclear which way to go. I really hope research could hurry up so we could all be a little more confident when we make treatment choices.
That being said thank you so much for so patiently answering my question in so much detail. I feel armed with a lot of information with which to go to my MO.
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I was given Anne Lamott's book, "Almost Everything", for Christmas and I'm just now reading this small, delightful treasure. In light of our conversation about dying, I wanted to share this quote with you Dancers:
"...I don't know if my last day will be next Thursday or in twenty years. Whenever that day comes, I want to be living, insofar as possible in the Wendell Berry words, "Be joyful though you have considered all the facts," and I want to have had dessert."
Love from PatGMc
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